Month 63 – Study on Effectiveness of Cancer Screening

On By DanIn Prostate Cancer, Research4 Comments
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Clearing storm, Imperial Beach, California

So 2016 is off to a stormy start for me (more on that in a minute) which means that I really haven’t focused on prostate cancer all that much this month. However, there was one article that caught my interest and one that I want to read more about.

The BMJ (formerly the British Medical Journal) published an article on 6 January 2016 titled: Why cancer screening has never been shown to “save lives”—and what we can do about it. Obviously, for those of us walking down this path, that title grabs our attention.

Because the BMJ requires registration to read the full article, here are links to a summary, the BMJ site, and an Infographic that you may want to check out. I’ll go back and read it in more detail when the dust settles after my stormy start to 2016.

IMG_20160105_132625929 (1)
Digging for roots

My rotten start to 2016 actually began late in 2015 when roots took over the sewer line coming out of my guest bathroom in my house and shut down anything flowing out of the house on New Year’s Eve. The plumbers returned on Saturday, 2 January to clear the line again, and on Monday, 4 January, they were breaking through the concrete slab in my house to get to the offending roots.

Two days and $4,200 USD later, the roots were gone, the hole was back-filled, and it all was concreted over. Of course, now I have to replace the tile, vanity, and sink, so I decided it was time for a refresh of the entire bathroom (another $6K–$8K, potentially).

You may recall that I flew to Chicago in the middle of all of this chaos to visit my sister and brother-in-law and their family. I returned to work on Thursday, 14 January and around 2 p.m. on Friday, I get a call from the Human Resources manager, “Could you please come up to my office?”

I entered the office and there was the HR manager, my boss, and her boss. “This doesn’t bode well,” I thought to myself. Sure enough, my position at the museum was eliminated in a cost-savings move, effective immediately. Bummer.  But, hey, at least I’ll have time to focus on the bathroom remodel now, right?

Not so fast…

On Saturday, 30 January, I thought I better get a job search in gear, so that evening, I came across a position which was exactly what I was doing before—volunteer coordinator—at for an organization less than half a mile from my old employer. I sent my resume off on Sunday; got an email  on Monday requesting an interview; had the interview on Wednesday; and was offered the job on Friday. I accepted and started the job this week. Oh. and it pays more, which will help with all the repairs.

See, there is a silver lining in every storm cloud!

Month 62 – New Year, New Perspective

On By DanIn Prostate CancerLeave a comment
Merced River & El Capitan, Yosemite National Park
Merced River & El Capitan, Yosemite National Park

It’s a new year with new beginnings.

I started mine with a trip back to my hometown outside of Chicago to my sister and her family. (I know. Who in their right mind flies from San Diego to Chicago in January?!?) It was a trip that was overdue.

In August, my then 54-year old brother-in-law had a massive stroke, completely out of the blue, that left him with no movement in his left arm or leg. My sister and I discussed the timing of me returning to support her, and she wanted to hold me in reserve for when the local support from friends and family there would begin to wane. Between a whole host of considerations, it just worked out best for me to return now.

Between my brother-in-law’s stroke and my own scare with the upward tick in my PSA four weeks later—and the fallout from both—it does make one reflect once again on priorities and the truly important things.

That point was driven home when I stumbled across this post on my Facebook timeline: The Tail End by Tim Urban. It’s a quirky read with an interesting twist on how to look at our time remaining in this world.

My 58th birthday was a few days ago, and with this stupid cancer thingy and a family history of cardiac issues (Dad and his mom both died at age 69 from cardiac issues), I’m afraid that I have more days behind me than in front of me. It’s time to get busy prioritizing my own list, and then act on it.

Oh. My brother-in-law? He’s made tremendous strides in his rehabilitation with movement returning in his leg faster than it has in his arm (but there’s progress in both). We’ll just have to be patient and see how far the rehab will take him.

Happy New Year!

I recently came across a prostate cancer resource, an organization called Us TOO International Prostate Cancer Education & Support Network. On cursory review, it looks like a very helpful site with access to support groups and plenty of related information.

Life After Radical Prostatectomy: 60 Months Later

On By DanIn Life After Prostatectomy2 Comments
Moonrise over Algondones Dunes near Brawley, California
Moonrise over Algodones Dunes near Brawley, California

So it’s been 60 months since my radical prostatectomy. How am I doing?

That’s a little more challenging to answer with this update, as there’s been some change since my last six month update.

Status

For four years, my PSA had remained undetectable, but in September, not long after my 54-month update, my PSA moved from undetectable (<0.03 ng/ml) to 0.05 ng/ml. Not a huge number and not close to the biochemical recurrence definition of 0.2 ng/ml, but concerning enough to both me and my urologist that we did a follow-up PSA test in December. Those results came in at 0.04 ng/ml. The urologist said there was no need to panic, but was also concerned enough to put me back onto a four month testing cycle again. This could likely go on for years.

Emotions

That unexpected movement in my PSA sent me on an emotional ride rivaling any looping theme park roller coaster, at least initially. As we get into the test, wait, test again, wait some more mode, I have to be wary of letting myself get trapped in a state of suspended animation. Between the initial test results in September and the follow-up test in December, I placed my life on hold for those three months. I can’t do that. I have to live between each test going forward, knowing that perhaps someday the reality will be that the cancer is back.

Incontinence

I continued with my weight loss program (75 lbs. / 34 kg), and that has certainly helped with my incontinence. But then I caught a cold in October that just wouldn’t relent, and during most of that time, I found myself back in pads as insurance when I coughed, sneezed, or blew my nose hard.

Since then, I’ve noticed there have been a few days where I may be more tired, and I may be prone to some very slow seepage that has been a little disconcerting.

Sexual Function

I continue to do so-so in the ED department. Remember, I have only one nerve bundle remaining, but I can get an 80%–90% erection most of the time. Some days are better; others are worse.

I do find that my libido is still there, and there are times through the day where I can feel things stirring down below. Not enough to obtain a natural erection—those days are gone—but enough that with a little stimulation, it would be much easier to achieve an erection.

Support Group

You would have thought that I might have sought out help in the form of a support group earlier than five years into this journey, but I didn’t until now. I joined the Gay Men’s Prostate Cancer Support Group here, mainly to see if anyone had any insights into the social aspects of trying to date after a prostatectomy. I’ve only been to two meetings so far and it has been beneficial to hear what others continue to go through. I’ll keep at it for a while longer and be there to share my own experience with a couple of the newly diagnosed members.

Summary

Yes, I’m one of the 98% of men diagnosed with prostate cancer to hit the five year survival mark. But with an increased PSA over two readings three months apart, I have to admit that I am a bit more concerned about the notion of recurrence.

Day 1,861 – Meeting with Urologist

On By DanIn Prostate Cancer, Recurrence2 Comments

I met with my urologist this afternoon to review my now detectable PSA readings.

She was happy that the reading stayed essentially the same, and said that there’s no need for panic. However, she’s concerned enough that we’ll retest in four months and will probably continue to do that for the foreseeable future, just as I anticipated. This test-and-wait routine can go on for years.

One of the things that I need to work on is not putting my life on hold until the next test result. I found myself doing that between September and December, and that’s not a good thing. Time to just say to hell with this stupid cancer and move forward. If it comes back, it comes back and I’ll deal with it then.

Month 61 – Letter to the Newly Diagnosed

On By DanIn Diagnosis, Prostate Cancer, Recurrence8 Comments

A few weeks ago, one of my blog’s readers, a three-time cancer survivor, emailed me with a suggestion for a post topic: An open letter to the newly diagnosed, offering insights and support based on my own experience. I found the idea intriguing, so here goes…

Dear Newly Diagnosed Cancer Patient,

“You have cancer.” Three little words that will change the lives of you and your family forever. It’s terrifying. It’s bewildering. It’s overwhelming. It sucks.

Oregon Sunset 2Cry a little. Cry a lot. But strive to get through the initial shock and emotional reaction as quickly as you can. You’ve got work to do.

Don’t bother trying to answer the question, “Why?” You’ll spend too much energy to never get the answer. You’ll need to focus that energy on what’s ahead.

Don’t be ashamed that you have cancer. Have open and honest conversations about it with those around you; don’t bottle it up. Find a tidbit of humor in the situation and inject it into the conversation. When you do, people will feel more comfortable around you. Recognize, however, that some people will find being around cancer too difficult and will withdraw. Let them go, for their sake and yours. Most will return once they’ve had time to process what’s happening.

Relationships will be put to the test and may change. Remember that this isn’t all about you. It’s about those closest to you, too, and sometimes it can be more than they can bear. You’ll have to be the strong one for them. Don’t be surprised when some of your most casual acquaintances become your biggest supporters. Embrace them.

Become your own advocate. Research, research, and research some more. You may have the best medical team in the world, but question them. While they’re highly trained medical professionals, they’re still human. They may have their own self-interests in mind. If you ask a radiation oncologist what the best treatment option will be, he or she will likely say radiation. If you ask a surgeon, the answer will likely be surgery. You have to be comfortable with what’s right for you, knowing all the potential risks, side effects, and complications.

Seek out other patients who have had your cancer, whether a friend, a family member, or in a support group (or even through a blog). They can be the greatest resource available to you. They can tell you their first-hand experience and how the cancer and the treatment impacts their daily life. Recognize that each case is unique, so take their input with a grain of salt and realize you may not have the same result.

You can research and consult with your medical team until the cows come home, but at some point you’re going to have to make a decision. You. It’s your body and your life. You have to be comfortable that your research was thorough, and that you’ll make the best decision possible with the information at hand at that point in time. Then place your trust in your medical team to do the best they can.

You will be stressed. You’ll have “cancer” on the mind 24/7. Figure out ways to distract yourself from the cancer thoughts even for a few hours. Go to a movie, take a drive through the country, take a hike—whatever works for you. The stress can wear you down physically. Get plenty of rest after those sleepless nights; watch your nutrition. You’ve got to be as healthy as you can going into the challenges ahead.

All of this is far easier said than done. I know. Friends and family will offer assistance; take them up on their offers. They’re not there to pity you; they’re there to offer genuine help and support. Don’t let pride get in the way.

While we all hope for the best possible outcome, the harsh reality is that not everyone survives cancer. Make sure your affairs are in order, especially advanced medical directives, and that your family understands  and will honor your desires.

Being told you have cancer is not the end; it’s the beginning of a process.

In my case, I was diagnosed with Stage IIb prostate cancer, and the diagnosis was the beginning of my process to determine what treatment option was best for me. But even if you’re diagnosed with late Stage IV cancer and are considered to be terminal, it’s still the beginning of the process to figure out the best options for your remaining time.

Lastly, even if your cancer allows for successful treatment, cancer will always be in your thoughts long after the treatment ends. I’m five years out from my diagnosis and treatment, and a little “recurrence cloud” follows me around every day, as I wonder whether or not the cancer will return. Once you introduce cancer into your vocabulary, it’s there for good, whether the actual disease is there or not.

I wish you and your family all the best as you begin your own journey.

Dan

Day 1,852 – PSA Results

On By DanIn Prostate Cancer, Recurrence1 Comment

The results are in. My current PSA is 0.04 ng/ml. In September it was 0.05 ng/ml and prior to that it had been undetectable for four years.

So what does this all mean? Hell if I know. I’ll learn more from my urologist on 15 December. In the interim, here’s my take on it.

The PSA level is still well below the biochemical recurrence level of 0.2 ng/ml, so no need to panic.

I’m glad to see that it didn’t increase beyond 0.05 ng/ml. That means it’s consistent for now (why quibble over one one-hundredth of a nanogram) and perhaps the change in lab methodology to the ultra-sensitive PSA test is, in fact, what’s driving the elevated readings.

On the other hand, that may not make sense. The less sensitive PSA test (accurate to 0.03 ng/ml) would have been able to detect the 0.05 or 0.04 readings if my PSA was elevated prior to the conversion to the uPSA test. That tells me that my PSA has risen slightly in the last year.

I have to admit that I hoped for better news but am glad it’s not worse news. As I predicted a while back, I suspect we’ll continue to monitor my PSA on a more frequent basis (quarterly?) going forward for years to come.

I’ll share the urologist’s thoughts after the appointment on the 15th. Thanks for your kind thoughts and support along the way.

Day 1,849 – Pricked

On By DanIn Prostate Cancer4 Comments

I arrived at the clinic right at the scheduled opening time, and nine people were already checked in ahead of me. After waiting 1 hour and 25 minutes, my arm was pricked and the blood was drawn for my PSA test.

Now the waiting begins. With the impending weekend, I’m not sure that I’ll have my results before Monday.

Day 1,848 – Blood Draw

On By DanIn Prostate CancerLeave a comment

Went to get my blood drawn at noon only to learn that the clinic lost the contract for two of its three lab technicians, so they cut back the lab’s hours to end at 11:30 a.m. No blood drawn today.

Needless to say, I’m pissed.

Now I either take off work tomorrow to get the blood drawn, or I wait a week until my next day off. Guess I’ll be late for work because, psychologically, I was geared up for everything to happen this week. Not sure I’m up for waiting another week to ten days.

More to follow.

Day 1,844 – Unfazed & Unshaven

On By DanIn Emotional Aspects, Prostate Cancer, Recurrence2 Comments

I’ve been surprised by how unfazed I’ve been over my upcoming PSA test next week, the one that will confirm whether or not my post-surgery PSA is actually rising.

I’ve not let it get the better of me in my day-to-day life, which has been remarkably pleasant. That doesn’t mean that I’m not concerned about the results, though. We’ll cross that bridge when we get to it. No sense in spending a ton of energy worrying about the unknown.

I plan on having my blood drawn on Wednesday, but a potential hiccup at the clinic may alter that. The clinic is actually relocating down the block to a larger facility, and the move is supposed to be completed by Monday. With the luck, there won’t be any delay and the lab will be up and running to allow me to take the test as scheduled.

When this rising PSA fiasco began in September, I had the blood drawn on a Wednesday and saw my results online on Saturday. I’m assuming a similar timeline for this go around. I’ll keep you posted.

Oh. Come Tuesday, I’ll be delighted to lose my Movember beard and mustache. Good to highlight awareness, but they’re driving me nuts and it’s time for them to go. (Besides, given its almost pure white color, I don’t want to be confused with a jolly ol’ elf that will be making his rounds in four weeks!)

CMS issues inappropriate proposal to “discourage the use of PSA-based screening”

On By DanIn Prostate CancerLeave a comment

Now the Centers for Medicare and Medicaid Services (CMS) are pushing to discourage PSA testing based on the USPSTF recommendations. You can provide input (by 20 November) by submitting a comment to CMS.

Sitemaster's avatarTHE "NEW" PROSTATE CANCER INFOLINK

Apparently our friends at the Centers for Medicare and Medicaid Services (CMS) have misunderstood the details of the D recommendation about PSA screening for prostate cancer issued by the U.S. Preventive Services Task Force (USPSTF) in 2012, and are now seeking input on a proposed mechanism ““to discourage the use of PSA-based screening in the general population of men,” on the grounds that, “A lower rate on this measure indicates better performance.”

The problem is that the actual proposal goes way beyond “discouraging PSA screening” because it would actually discourage any use of the PSA test in an otherwise healthy male. Even the USPSTF never went anywhere close to such a recommendation! The recommendation as written is, at best, strange and ill-advised — even if one thinks that mass, population-wide, PSA-based screening for risk of prostate cancer is not one of the world’s greatest ideas.

Prostate Cancer International is currently…

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